August 5, 2014

We were really looking forward to our meeting with the neurologist Monday afternoon. Sometimes, you live so long in the middle of not knowing that even the prospect of bad news is better than continuing in this sort of Never Land. So long as you know for sure where you are and where you are going. And besides, we were sure it would be good news.

We came away with a little good news but mostly no news. And then tonight we got the bad news.

First, the good news. Dr. R was frustrated because the person in charge of reading the EEG had not gotten him the report by the time we were scheduled to meet. However, the neurologist in charge of reading the report said they saw no Hypsarrythmia on the EEG. Sounds like good news. And to a degree it is.

You have to know a few things to understand what I am getting ready to say. The worst case scenario with Infantile Spasms and Hypsarrythmia would be where Addison was three weeks ago. Chaotic brain waves and seizure activity 24/7. So the decreased seizure activity and not seeing Hypsarrythmia on the EEG means he is improving. BUT in a lesser degree of infantile seizures the brain activity is normal at waking but hypsarrythmia appears during sleep. Because of the way the brain connects and processes this is still a pretty dire diagnosis in terms of development. So when doing an EEG to look for Hypsarrythmia the best case scenario is to have some sleep and some wake time.

Only Addison doesn't sleep. The meds keep in awake pretty much 24/7. At best he doses off for a minute or two (and I mean literally a minute or two) at a time. When we saw Dr. R on Monday he was trying to get confirmation from the neurologist reading the study as to whether or not there was enough sleep on the EEG to conclusively say Addison is not reverting to Hypsarrythmia when he sleeps.

And then there is the complication that the EEG was not done on the day when weaning begun. Which means if there is hypsarrythmia present we don't know if it is because the medication did not work or because he reverting when coming off the medication. Allen and I were particularly frustrated with this bit of news because if it is that important to have the EEG on a specific day why do they not make provisions for that?

On top of that Dr. R. some concerns about Addison's sodium and potassium on the steroids. And unfortunately, he has incredibly weak veins. This is in part hereditary and in part because of his hypotonia. The bottom line on that is despite needles and bruises and a lot of crying they were not able to draw blood. Eventually, two phlebotomists gave up. I have never known that to happen. I've seen them work on him for 90 minutes before but never known them to give up. So we don't have any way of knowing how his electrolytes are responding to the steroids.

Among other things we don't know... if he will need to do ACTH... how long before he begins recovering from the steroids... how to get nourishment into him... how to deal with his constipation... how long before we might see some hint of our son... how long before his immune system will be strong enough to withstand normal day to day contact... what to do about the rash...

Dr. R did say we should expect it to be many months (maybe 6 or more) post steroids before Addison's brain is able to start learning again. That's not getting to where he should be or even getting back to where he was, that is just his brain making connections again in a way that is organized enough that he will begin the learning process again.

Yeah, my heart broke. Allen is either very optimistic or in denial. He said there is no way it will be that long. Only time will tell.

Dr. R did tell us he would connect us with a hospital and a neurology team down south so we could schedule our vacation for September.

And in regards to Addison's surgery Dr. R told us once Addison has weaned from the medication he would defer to the surgeon and anesthesiologist as to when Addison could safely undergo his mouth surgery.

Dr. R gave us the new weaning schedule which would have Addison going down to 2 doses from August 5-10, 1 dose August 11-15 and then off steroids all together.

We are scheduled for a repeat EEG on the last day of medication and we pray Addison will sleep at that time so we can get a pretty conclusive EEG.

Except, even a good EEG isn't necessarily good news. Because only time will tell if he reverts back to Hypsarrythmia once he is off meds. We will meet with the neurologist again on the 18th to revise the plan as needed.

So in the long and short of it, we came away hesitantly celebrating, possibly, maybe, having a good EEG. But we didn't want to get too excited... because who knows if it was really good.

This morning we started counting down doses. Just 15 to go. We consulted with his surgeon and anesthesiologist and scheduled his surgery in Connecticut for September 5th. We met with our beloved physical therapist and agreed to suspend therapy until...?

Addison had a great feeding when he woke up and we were excited about that. But by mid afternoon something odd was happening. Not only are his cheeks swelling but now the inside of his mouth. Making it even harder for him to swallow. He ate just about nothing at his second and third feedings today. We watched him closely and prayed that he can make it just ten more days. He took miserable to heights unknown this afternoon.

And then something happened this evening. He stopped moaning. He sat up. He looked around. He made some happy sounds. He watched the big kids splash in the pool. He even held a seashell in his hand for quite some time.

We smiled. We saw hope. We knew things were looking up.

And then Allen saw a message on his cell phone. The doctor called. And that's the bad news.

After getting the final read on his EEG there is some disturbing activity in patterns close to hypsarrythmia. And they will actually stop the wean and instead increase the steroids. We won't know all the ramifications of this until tomorrow morning. But tonight one thing is clear... it stinks!

I've just been catching up- sorry I haven't commented yet! Praying for you all and dear Addison especially. Please keep us updated as much as you can, I'm sure you are extremely busy but I will be anxiously looking out for news! Hugs from us all.

You will all be in my prayers. This is the first of your posts that I've read in a quite a long time. So, I'll try to backtrack to catch up. I'm so sorry you're going through all of this. As scary as it is, your faith has, and will continue, to keep you strong.

Kathleen Wachter

Most of all I am a Christian, wife and home school mom to nine. Here you will find snippets from my life, recipes, tips for child rearing, home schooling advice and moments from our journey with down syndrome.